Monthly Archives: March 2010

Sing

Managing the prognosis can be almost as difficult as coping with the diagnosis. The bone scan results are not as good as we hoped and now we make appointments for another specialist, another opinion on the long-term effects of the months of chemotherapy, the full body irradiation and the cortisone.

Sometimes I sit in complete silence in an empty room, processing it all but even my silent thoughts fill the space with deafening sounds. So I choose to leave early for a coffee before work. As I drive I am aware of the way the headlights reflect off the wet road causing a trillion stars to shine back at me off the bitumen.

It’s strangely beautiful this eternal night, this sleepless state, I find myself in. The whoosh of the wheels of the traffic on the wet road can’t drown my anxious thoughts. Nor can the bustle of businessmen lining up for coffee while I sit comfortable in a cosy corner pouring my heart on my page. It’s the light and the sounds, the company of people that provide comfort over the tug inside me.

Anxiety hovers on the edge of my mind and as I write, I see him jump. A tiny man on a bungy cord descending down to the depth of my soul then rebounding upwards again, he takes refuge on the cliff of my heart. “Be still, be still.”

Sometimes, like the children, Hope finds it difficult to find a place in the circle were all my thoughts have gathered to discuss my life. Sometimes all my thoughts need do is wriggle backwards a little and let Hope in. Instead Hope lingers in the background waiting for someone to notice she needs a spot. Unlike Fear, she waits to be invited.

Fear plonks himself right in the centre so we have to notice him. He is outspoken, doesn’t wait for a turn; we have to respond and ask him to move.

Not Hope. Hope waits for the invitation and when Hope arrives we all want the spot next to her. If only we could remember the trick for making room.

I don’t banish Fear completely. To ignore him or send him away would seem foolish. Sometimes Fear has something worthwhile to say. I need to listen to his words but not let him have control. I am the one in authority. I have the final say. If he causes trouble I take him to a higher authority. And so Fear is managed.

Fear reminds me to double check the medications each morning, to make the appointments, to phone for results. Fear gets me out of bed but it is Hope that reminds me to pray.

Then after prayer and God’s word, Faith comes. Faith is contagious. Everyone is happy to see him. They don’t mind if he gets the best spot, they are happy if Faith takes the place on my chair.

Faith instructs us and Fear is silenced. Still present but silent!

Fear watches, waiting for another turn.

Hope keeps an eye on Fear and brings a finger to her lips, gesturing Fear to stay quiet.

Faith has the capacity to lift our eyes. The problem doesn’t seem quite as big when Faith is with us. Faith says, ‘We’ll work this out. Even if today we only get through a little part, there will be answers tomorrow.’

Hope and Grace hold hands together. They smile and swing their hands like delighted children.

The bones will grow strong with medication and time and prayer. Her body will produce what it needs. We fix our eyes on Jesus because Faith reminded us to lift our heads.

Hope says anything is still possible and Joy steps in, reminding me to put on music and sing. Like a circle of crying, fearful, excited, talkative or shy children; all my thoughts come together when we begin to praise.

Great battles have been won throughout history when the people began to praise.

2 Chronicles 20:20-22 (Amplified Bible)
‘And they rose early in the morning and went out into the Wilderness of Tekoa; and as they went out, Jehoshaphat stood and said, Hear me, O Judah, and you inhabitants of Jerusalem! Believe in the Lord your God and you shall be established; believe and remain steadfast to His prophets and you shall prosper.
When he had consulted with the people, he appointed singers to sing to the Lord and praise Him in their holy [priestly] garments as they went out before the army, saying, Give thanks to the Lord, for His mercy and loving-kindness endure forever!
And when they began to sing and to praise, the Lord set ambushments against the men of Ammon, Moab, and Mount Seir who had come against Judah, and they were [self-] slaughtered.’

Every enemy can be defeated. Every anxious thought settled. Every life healed. Every victory won.

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Mirror

Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:12

Under her wig, Sam has a head of short, soft wavy curls.
“You look beautiful.”
I say as I stand behind her at the entrance to her little en-suite that Peter built her.

She is looking at her reflection in the mirror, running a comb through the curls.
“Thankyou,” she responds her eyes meeting mine in the glass.
“You could go without the wig now?” I suggest, unsure if I dare.
“I could, but to me, its not me, I should have long hair!”

She lifts the wig off the toilet lid and pulls it in place as she has for the last year. A little tug downwards at the back, then adjusting the front and a sidewards turn to check that its evenly positioned.

“Oh well,” she shrugs, “it’ll just take time.”

I have no words. Instead my mind flashes back six months and I see her in her hospital bed with oxygen pipes in her nose.
I see the dents the cords have made pressing on the swollen flesh of her cheeks.
I see where her eyebrows once were.
I see her eyelids that are puffy and sore, and closed.
I look with regret at where her eyelashes had once danced in flirtatious motion. They are gone as well.
I look at her face and its covered with GVHD of the skin.

“You’ve come so far, “ I answer, even though it wasn’t a question.

As I look at her reflection, I can see all the ages she’s been.
I can see her propped like a tripod in front of the 80s style mirrored robes we had when she was a baby.
I can see her at 2 in front of my mother’ cedar robe rubbing face cream on her chin.
I can see her standing on the bathtub at 5 to see how she looked in her school uniform.
I can see her at 8 in her leotard practising her demi-plie before ballet class and then
I can see her at 13, unravelling the rollers for a ‘perm-for-a-day.’
I see her having her ‘colours done’ for her 15th Birthday and discovering she is ‘a summer.’
Then at MAC a year after that having a makeover in Paddington.
I see her trying on formal dresses and academic gowns, always the same self assured grin.

She always had a fairly good self- esteem. God knows I told her often enough ‘you are beautiful,’ against my mother’s warning that it might go to her head.
The years flash before me and though there are many faces, it is just one face and it’s the face that I have loved and kissed for 22 years. I know what she means about her reflection because apart from at 1 when her hair was still growing and at 5 when she had it all cut into the cutest bob, my daughter has always had long hair. And so I acknowledge that she is right, “it will just take time.”

Like Bob Graham writes, “A loose feather can’t be put back but a broken wing can sometimes heal. With rest and time and a little hope, a bird may fly again.”

Today I attended a Birthday celebration for a precious friend. She asked that we did not bring presents and instead her invitation told the story of the women in Watoto Village.

It read “Watoto is a place of refuge in Gulu, Northern Uganda where homes have been built for war affected women and children. Child brides who have managed to escape the LRA are at times found and brought into this place of refuge where they are cared for, given love and counsel to try and restore health and dignity after they have been raped, abused and at times, tortured by disfigurement to prevent them running away. Many of these women have had noses, lips and ears cut off and see in the mirror everyday a reminder of the nightmare that they have lived.”

As I listened to my friend speak this morning, one statement stuck in my mind. She said, “These women are our sisters, we just have not met them yet. If we had met them we would do whatever we could to help them.”

I thought of the people who have gathered around me since my precious daughter got ill with cancer. I am so grateful for all the people who have cried with me and prayed for us. I am indebted to people who heard our story, maybe strangers who somehow found me through my blog and began to care about me as I shared our battle direct from my heart.

I have watched the statistics graph on my blog register the ‘clicks’ each week and I have wondered what to do for all these readers. I wonder why you keep coming back to the words of my journal. Some of you are friends but others, I guess just found me by chance? An average day sees 105 visitors to ‘girl on a swing.’

Today my dream is that we could partner for a greater cause. We are all women, wives, daughters, sisters, girlfriends and mothers (apart from you lovely men who also stop by to read occasionally).

It costs about $3000 to restore someone’s smile and bring back dignity. Imagine if that was your daughter in Uganda with no ears, no eyes and no lips. I know the agony it has been for me to see my daughter lose sight of who she was but she will be fully restored. This is possible in our nation because we have great doctors, a high standard of living, resources, community and wealth.

If every reader this week gave $10, we could restore the faces of two women and give them some hope for the rest of their lives.

Like Sam says, “It will take time.” But wouldn’t it be amazing to share our hope. Please consider if you can make a direct deposit, the following non-profit account is available.


For more information see Living Hope in Blog roll

LET’S FACE IT
MAKING A DIFFERENCE
WESTPAC
BSB 032196
ACC NO: 240749

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The Box

Sometimes life contains us – like a box with a lid. We think we are stuck in a rut, that this is permanent, that there is no way out. We tell ourselves to settle, get in line with the status quo, try to keep as safe as we possibly can and to not move around too much inside that box because the walls are made of cardboard, it could all just fall apart.

Yesterday was Sam’s Birthday and eating breakfast she recalled all the foods she was told she could not eat when she was diagnosed with Leukaemia. It was terrifying. After telling us that our daughter had cancer and that she may not live, they sent the nutritionalist in and she gave us a list of things she could not eat.

The nutritionalist explained that because of Sam’s low white blood count she was at high risk of infection therefore lettuce was bad and so were berries because they are almost impossible to wash. Mushrooms would cause fungal infection, going out in public would put her at extreme risk of catching a cold, not washing my hands when preparing a meal or before touching her could be adverse to her health and on and on it went until I, like Alice, found myself reeling backwards down the rabbit hole being hit by large objects as I fell.

Even without cancer we can feel limited, contained and compromised. We can feel that due to our environment or our circumstances that we have no choice but to conform. In conforming we will have money in the bank, food on the table, a roof over our head and all of that adds up to stability. We love stability, safety and security. We like to be in control.

I have been out of control for over a year now, I have felt swallowed up by life. I have seen the puff of chalk dust as I disappeared like Julie Andrews and Dick Van Dyke, through the pavement. I have felt my horse gallop off the Merry-Go-Round to an adventure I did not arrange and every now and then, I found myself on my bed crying until I could not stop.

There’s a lie that I hear inside my head. It tells me we will never get to the end of this journey. It tells me I may never get back up. It tells me to accept the unbleached cardboard walls of my life but as I go about my day teaching the children, a dream is ignited in me.

As my children sit in a circle (which admittedly takes them a little too long to form), I place a cardboard box in the middle and I ask them what it is. They look at me as though I am mad and then one child pipes up the courage to say ‘It’s a box.’ ‘No,’ I respond It’s not a box!’ They sit and they stare at it. Is there something they are missing? Then I prompt them, ‘What could it be?’ Little lights turn on all around the circle and the hands go up.

‘Its a racing car.’
‘Then drive it,’ I say

‘It’s a rocket ship!’
‘Then fly to the moon.’

‘It’s a pirate ship!’
‘Then sail the mighty seas.’

‘It’s a stage.’
‘Then dance.’

No wonder Jesus told us to come as a child.

In front of us he presents a myriad of possibilities but to us it looks like a common cardboard box. We could pack the box with an ordinary life. We could endeavour to fit in, follow instructions, show up, use punctuation, go to college, get good grades, endeavour to be good at sport, never challenge authority, avoid being talked about, be a good citizen and all these things are wonderful and admirable but when confronted with a life threatening illness none of these things matter anymore.

It’s probably safe to say I was the most talked about person in the haemotology ward for the 8 months we spent at RNSH before being transferred to St Vincents. Why? Because I was determined to fight for my child’s life.

I negotiated blood transfusions when there was no blood in the blood bank, appointments they said were not available, sedation for bone marrow biopsys, anti-nausea drugs when she was vomiting, a bed when only chairs were available. I bought gifts, I smiled, I went from nurse to nurse, at times I begged, other times I negotiated but I was fearless in my determination to get everything my daughter needed to minimize her pain. In the year that my daughter nearly died from Leukaemia I learned two important lessons. That problems are designed to be solved and that people are waiting to be lead.

I realized that Jesus is very real in times of crisis, that He is very present. He spent his time on earth training leaders because He knew when He left there would be problems to solve.

In John 21 we read the account of how Jesus prepared to reveal himself to the disciples after His death and resurrection. It says, ‘There they were together Simon Peter and Thomas, called the twin and Nathaneal from Cana of Galilee, also the sons of Zebedee and two others of His disciples.

Simon Peter said to them, I am going fishing! They said to him we are going with you! [I guess that makes him a leader]

So they went out and got into the boat and throughout that night they caught nothing. [There’s the problem].

Early in the morning, Jesus stood on the shore, but the disciples did not realize that it was Jesus. He called out to them, “Friends, haven’t you any fish?” “No,” they answered. He said, “Throw your net on the right side of the boat and you will find some.” When they did, they were unable to haul the net in because of the large number of fish. [There’s His enabling power at work].

God has called us to live life without limits and no matter the circumstances we find ourselves in today, ‘He is able to do super-abundantly, far over and above all that we ask or think.’ With God on our sides anything can change. The impossible is possible.

So if there was no box, or the box could be anything, what would you do that you are not doing today?

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Chalk

On playground duty the other day an older boy fell over playing handball and came to show me his side. It was covered in chalk, all the way down his arm, the side of his shirt and his leg. It was pink.

“Will this come off?” he asked me. “Easy,” I said, “Mum will just throw it in the wash!” “Oh thank goodness!“ he responded as he ran off with his ball. “Nice colour.” I teased as he ran. He smiled back and recommenced his game. I suddenly noticed that the basketball court was covered in designs and writing in coloured chalk. This is not usually the case at our school.

Starring at the ground, I had a “Mary Poppins” moment as my thoughts went through the pavement down the path of my memory to two little girls that I once knew. I saw them at the $2 store with their chunky crayolas; I heard their sweet voices asking me if they could draw straight after they had lunch. I could see them on their knees with their pastel colours drawing rainbows, houses and daisies. They wore cotton dresses and bows as they created their masterpieces outside on the concrete path that lead to our front door.

Do you ever disappear through the pavement to a memory from your past? Do you ever see the pastel colours of childhood; relive the moments of delight from your children’s past? Or is it just me? Is it because I am surrounded by children everyday? Is it because the little girl I thought would live forever came so close to dying? How did this Petri dish of emotion become stuck in my oesophagus? And what do I do when the tears I cry gush over and cause a flood that becomes a rainbow of pastel colours all bleeding into each other.

I deal with tears on a daily basis. They are not always my own tears but the tears of the children I teach. Someone cries in Kindergarten a few times a day for a thousand different reasons. Most mornings a child will bravely announce “I did, the kiss and drop,” as he tucks in his shirt and then his eyes meet mine filled with tears, accompanied with a sniffle. I quickly record his bravery on my board inside the ‘smiley face’ and he finds his place on the mat. After recess there is a line of children who are calling my name, showing me their elbows and their knees because they are ‘needing’ a bandaid to stop the blood.

I try to be patient and gentle. ‘We are all wounded,’ I think to myself and I peel back the glossy flaps of the elastoplast and tenderly dress their sores. Sometimes a child is distracted by a wobbly tooth, or worried that their lunch order did not make it in the box before 9.30am, or that they can’t remember if they were meant to catch the bus. I listen to their concerns reassuring them that in the end it will be all right. The tooth fairy will come, the canteen lady will understand and we can go to the office to call their mum.

I wonder if God gets bored with all the seemingly trivial things I worry about. I wonder if he grows tired like I do sometimes with the children. I wonder how many times each day he tells himself, ‘she’s only human, be patient with her, speak gently.’

Sometimes my heart is overwhelmed. I am anxious because the blood tests are due again and the bone scan is booked for her birthday (the only appointment I could get before she sees the haematologist) . I worry that things will not be perfect and no amount of telling myself that ‘in the end it will be alright’ allows me fall asleep at night. My heart is heavy with sadness and I wish it would rain on Saturday, that the sun would not shine.

Anne Lamott writes “I usually welcome the rain when I’m tired and stressed. Rain suggests you should go inside, rest, try to stay dry. The scent of the rain is fresh and earthly, clean and woolly, of leaves and dirt, wet dogs. Rain gives us back something that has been stolen, a dimension we’ve been missing – our body and our soul.”

So even though it’s sunny outside, even though it’s the perfect day to draw on the concrete with pastel chalk, even though obligation says ‘go to the beach, dive under waves, be happy.’ I pretend it is raining, I stay indoors, I cry, I move around furniture, I drink tea until I have a headache. I don’t allow myself to be kissed or dropped, I don’t tuck in my shirt, I just cry. I let the tears fall. And I fall too, into the arms of my Father. He carries me.

He reassures me that the water that has spilled over the perfect watercolour painting of my daughter’s life is still repairable. He reaches into His pockets for a tissue. He dabs the painting dry. He shows me that He can restore everything. Not the way I intended, not the way I dreamt it would be. The colours of our lives are not sharp, the lines between the pictures are blurred, it’s not comical in anyway at all but it is beautiful. I take a step back and I look at our lives. The dappled colours of light and shade have created something beautiful. Amongst the heartache and the tears an impressionist work has been formed. It isn’t over yet. I can imagine God carrying his stool and his palette down to observe again, at a different hour for a different study. Just like Monet did, we will observe the water lilies from yet another perspective.

He isn’t in a hurry. He knows eternity. He is preparing me for that.

“Look at the light today,” His Spirit instructs, ‘See how it plays, the colours it forms.’ I yield. I listen to hear His voice. I lean in. What else can I do?

I must leave the past in the past. I must see the opportunity provided by the rain that washes the chalk of yesterday from the pavement. As I cry he heals me.

It’s a new day to start again. To delight, to discover and to wipe the tears of another!

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Listen by W.S. Merwin

Listen
with the night falling we are saying thank you
we are stopping on the bridge to bow from the railings
we are running out of the glass rooms
with our mouths full of food to look at the sky
and we say thank you
we are standing by the water looking out
in different directions

back from a series of hospitals back from a mugging
after funerals we are saying thank you
after the news of the dead
whether or not we knew them we are saying thank you
in a culture up to its chin in shame
living in the stench it has chosen we are saying thank you

over telephones we are saying thankyou
in doorways and in the backs of cars and in elevators
remembering wars and police at the back door
and the beating on the stairs we are saying thank you
in the banks that use us we are saying thank you
with the crooks in office with the rich and fashionable
unchanged we go on saying thank you thank you

with the animals dying around us
our lost feelings we are saying thank you
with the forests falling faster than the minutes
of our lives we are saying thank you
with the words going out of like cells of a brain
with the cities growing over us like the earth
we are saying thank you faster and faster
with nobody listening we are saying thank you
we are saying thank you and waving
dark though it is

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Selah Sunday

Sometimes we think so much. At least, I do! I don’t know about you?

I wonder and I think. I try to make sense of life. I love the profound meditations of Psalms where David writes ‘Selah.’ We translate it to mean – ‘stop and listen’ or ‘pause and calmly think on this.’

Or maybe it signifies a break in the song, like a silence where nothing plays at all, except the beating of our heart inside our chest that has been caught by the melody.

Maybe Selah is a prayer ending in Amen – a cry that says ‘Let it be done.’ Or the phrase in the Anglican prayer book that I grew up holding, in the pews of my dad’s church, “Lord, hear our prayer.”

Selah may mean ‘to hang,’ like things are being measured on a balance scale. It’s hard to explain and comprehend that silent thought that reverberates through our soul.

What if Satan asked God for permission to try you? To strip everything away, the way he did to Job? And what if God gave him permission knowing that in the end you would stand? What if he challenged every dream of your heart? What if he destroyed everything you held dear? Would you still declare that he was God? Could you still be still?

What if in the end when you think you had lost it all, you discovered that you gained far more? What if you were stripped of your own methods to fix things, reliant on others to come to your aid, unsure if life would exist tomorrow you learned the wonder of today? What if you, through all that was eroded away, discovered something new? What if you discovered an ability to look death in the face and be unintimidated by anything at all?

What if you were able to rely completely on God in heaven, discover His strength in today. What if your own intellect no longer limited you, nor your personality, nor your wealth? What if you could do anything at all? What if somehow being stripped of your ‘everything,’ there was an exchange? What if a new presence and power was made manifest in your life? Would it be worth it? Would you still pray God use my life?

If we let go and let God, putting all our trust in Him, would He really be able to do what His word promises? And if so, could you think outside the small box of your life and live by His unlimited power? What would that look like?

These are my thoughts this Selah Sunday.

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Keys

The best thing about teaching Kindergarten is that I spend my days with possibility thinkers. If I tell them they can do something they immediately believe they can. In fact mostly they believe it before I even tell them. They hear the introduction to a song I’ve never taught them and one child will always say “Oh I know that one, I love it.” I show them numbers they have never seen and they say “I used to know it,” they tell me the word ‘is’ says ‘am’ with utmost confidence and given the opportunity to run an errand somewhere in the school at least 3 kids are on their feet saying, “I know where it is, can I do it?”

The truth is, when questioned and cross-examined they don’t know the song, they never knew the number, ‘is’ says ‘is’ and they cannot find the principal’s office. They don’t know because all this information is new to them, they have never seen it before but they are not intimidated.

Life experience intimidates us. We’ve been laughed at, ridiculed and made a fool of. We have taken risks, failed and become tired of trying. We’ve grown up believing the intelligent people are always right and the pretty kids are always the most popular. We’ve learned to just accept things as they are because fighting and resisting requires effort and if at the end we are going to fail anyway, then what is the use in trying.

Our school is like Fort Knox. Everything is locked and everywhere you go you carry your key. It dangles around your neck on a lanyard, it gets caught in little girls hair when you lean over them to stamp their work and its dangerous when you are laminating, so occasionally I take mine off and I leave it on my desk.

I did this the other day when we went to assembly and on returning to class I discovered I was locked out of my room. It’s not easy to leave 18 Kindergarten children unsupervised outside your classroom while you search for a key so I decided to send one of the children on an errand. They didn’t need to go far; in fact the teacher in the next classroom has the same key. I asked the child who was this week’s leader to go but before he had comprehended we were even locked out another child at the end of the line was already making his way to the front.

“I will, I will, I’ll get the key,” he said in eager desperation. So I sent him off and in moments he was back with the teacher’s key swung around his neck. “Okay everybody,” he said “I’m the teacher now.” I like this kid because he is not intimidated. He is confident, bold and unashamed. At 5, he already knows the power of the key. The key gives access to whoever carries it. It doesn’t matter what you know really, you just need connections and people with keys.

When Sam was diagnosed with cancer I was intimidated. The young doctor was more intelligent than me. He told me things that I understood were true because he had devoted his life to learning them. He gave me statistics, facts and bad news. He told me her life would be short without treatment, he told me the sickness would continue for at least two years with successful treatment and I was afraid.

Everyday there is something to deal with, little things that in a normal, healthy body would be easily resolved. This week it’s an enormous wart that has developed where an ingrown toenail was removed. Today it’s infected so it is sore and sensitive on her already fragile skin. Its tedious to deal with the never ending string of things that seem to crop up and require phone calls to the hospital to request prescriptions to be faxed to pharmacy and another drug is added to the list.

Every now and then I think it is all too much. That I don’t have what it takes to keep going but God places an illustrative sermon in front of me every day. He reminds me that the children I teach have leadership within them and the ability to problem solve and if I would just come as a child that I too, would have everything I need.

Carrying the key does not make you the teacher but it gives you access to all the same doors. So I take God at His word when He says: “You will have complete and free access to God’s kingdom, keys to open any and every door: no more barriers between heaven and earth, earth and heaven. A yes on earth is yes in heaven. A no on earth is no in heaven.” (Matthew 16:19 – The Message)

It’s a choice each day to be full of faith. We can’t do it on our own but we have the very best teacher. If we lean in He reminds us that we have what it takes. He says “Don’t fear: I am First, I am Last, I’m Alive. I died, but I came to life, and my life is now forever. See these keys in my hand? They open and lock Death’s doors, they open and lock Hell’s gates. (Revelation 1:17-20)

Our lives are in His hands, He holds the keys and we put our trust in Him.

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